Beyond Access, Towards Transformation – Diary of a Baba

Posted on April 7, 2018

Last weekend, I had one of those days of multiple events and was on the go with Collin in the stroller. We needed every ramp and elevator that was available to us. There is not one day that goes by that I dont think or notice the material and non material gains of the disability justice movement. But I know these gains are beyond “access” and about transformation.

We tend to take for granted the movement of movements that brought about ramps, elevators, texting, practicing interdependence, self care/collective care (not selfish care), the list goes on. We also forget the cross movements of the civil rights and the disability rights movement in the 1970s. I’m no expert but the more I learn, I’m in awe of the boldness and creativity and the invisibility of the disability justice movement.

As a parent of an autistic child, I’ve had to go through my process of owning this identity and living up to it every single day. I’m grateful for Rebecca Cokley who I met at Rockwood. Just weeks after Collin’s diagnosis, she saw me in all my rawness and welcomed me to this movement and community. I am forever grateful and forever learning. She reminds me that those who are able to grow old and age will experience disabilities of long term pain, illness, and/or not being physically mobile. It is in all our interests at the end of the day.

As a cis-gender middle class male, I’m working on many things but ableism in our society is so deep and entrenched. I cringe when i see mental health and disabilities get conflated in the gun control debate; or when folks with mental health issues become the scapegoat for any political issue. I bite my tongue when I hear the word “crazy,” “weird,” “strange,” or “odd.” My heart sinks when I say these words because it is so embedded in my own language.

And it is not just about words, it is about how I show up for Collin. Many who meet him for the first time say, “You can’t tell he has autism.” or “He seems fine.” That is not the issue. Collin is indeed FABULOUS and BRILLANT and does not need to change; the question is if we will change and accept him when he breaks out of societal norms. As I’ve written before, Collin has super powers and has made me a better baba and person.

“Many who meet him [Collin] for the first time say, “You can’t tell he has autism.” or “He seems fine.” That is not the issue. Collin is indeed FABULOUS and BRILLANT and does not need to change; the question is if we will change and accept him when he breaks out of societal norms.”

It is also about me. I’m colorblind and I need to own that more; I don’t do enough when people ask me what color is what or if I can see the color of their shirt. I play along because that is how I’ve been trained my whole life. More than anything, I need to own my special powers of seeing the world, people and our truths in different and nuanced ways. (Not to mention, I have a pretty awesome sense of smell.)

The disability justice movement in the U.S. is the ultimate civil disobedience. It is led by so many badass queer and trans folks of color, who are throwing sand in the gears of linear and capitalist logic in the belly of the beast. It is literally “slowing down” society for us to open up space and transform relations for all people. In the end, it is beyond just getting access to society and is truly about transforming “special needs” into society’s needs.

For more resources, here are some of my movement s/heros that folks should follow and learn more about: